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Our Lives, Our Health Care: Self Advocates Speaking Out

The Autistic Self Advocacy Network and Office of Developmental Primary Care are pleased to release, “Our Lives, Our Health Care: Self Advocates Speaking Out About Our Experiences with the Medical System.” This document outlines the perspectives of people with I/DD on their interactions with the health care system and articulates an agenda to reform the way health care services are delivered for people with intellectual and developmental disabilities (I/DD). This report was compiled based on feedback from focus groups conducted by People First of Washington State, Green Mountain Self Advocates and the Autistic Self Advocacy Network of Boston. We thank them for their leadership and look forward to partnering with self-advocacy groups and allies across the country to advance health care access for people with I/DD.

We would also like to thank the WITH Foundation for its support of this report and for championing the right of people with disabilities to receive quality health care. With the support of WITH, ASAN has released a wide variety of policy briefs on health care access for people with I/DD over the course of the last year, such as our analysis of the Affordable Care Act’s impact on the I/DD community. ASAN is currently in the process of developing and disseminating detailed state policy toolkits for advocates wishing to impact systems change on health care service delivery for people with I/DD, such as our recently released Organ Transplantation and People with Disabilities: A Toolkit for State Advocates. To improve health care delivery, the Office of Developmental Primary Care has developed tools and resources for self advocates, caregivers, clinicians and clinical educators.